Infected 45 years and still only F1? Is it possible?

[mike716]

Hi, guys. It's me, Mike the forum lurker, back again with another mind-twister question that will no doubt cause dissention and get me into trouble, but here goes:

Has anyone here ever heard of someone having HCV for over forty years and still being only at the F1 stage of liver fibrosis?

This is the story (I say "story" for lack of an adequate censor-passing epithet) that my hep MD has been feeding me for a year now. He says that from my medical history I probably got infected from contaminated blood when I had a motorcycle accident at the age of nineteen (I am now 65) and was transfused at the hospital that treated me for concussion.

Personally, I think this story is a lot of self-serving hooey, and that in reality I was infected by a bad dentist here in Argentina just a few years ago.

My biopsy six months ago showed F1-F2 fibrosis, but my blood markers and GGT have been going steadily upwards in a continuous progression through eight blood tests over the past 14 months, and I definitely do not have the energy I had even one year ago.

So, my hep MD thinks that I was infected 45 years ago and am a very slow progressor, and I think that I was infected a coupla years ago and am progressing rapidly.

This is not an academic question. My hospital is postponing treatment based on their diagnosis: they think I can wait a few years for a better tx. Whereas I think I may have cyrrhosis before they ever get to my next biopsy.

What say you all? Is it possible to be F1-F2 after forty-five years of HCV?

Mike

[copyman]

It really doesn't matter when or how you got it. What matters now is what your biopsy report said. Personally I would wait for the new drugs coming out in the next few years. I would monitor blood tests every 3-6 months. I would not treat based on LFT's alone, especially with an F1-F2 biopsy six months prior. Best of luck whatever you decide.

[newleaf09]

I have read that there are lots of people who are little affected over the years but have also heard that as you get older (more wear & tear I guess) the disease begins to progress faster.  You can still live with compensated cirrhosis but the danger of developing liver cancer goes up exponentially; so you don't want to go there.

Search for Natural History of Hepatitis C and you'll find some of those articles about progression.

Have you mentioned your concerns about the marker tests to your doctor?

[GreatBird]

I've had HCV as long as 48 years or perhaps only 37 years and my liver was biopsied at stage 1 grade 2 in both 2002 and last November, so yes I think it's possible to have your liver stats after 45 years.

[bajawoman]

Yes it is possible I was dx with hep C in July 2008
I was dx with Hep B in 1964  and it was not Hep B but Hep C
I had a Hep B panel just recently to see if I ever had Hep B or had both and no never had Hep B so 45 years later it is possible
I have issues from having it so long but can wait for the newer drugs
Not sure why I am not more advanced either
I am sure there are many around our age that have never been dx and will most likely live to a ripe old age  

[portann]

The strongest assumption in my case is that I've had it since 1969. That doesn't put me into your stellar category of possibly having had it for forty-five years but almost!

And my damage is negligible. Of course, like you I could wonder about my dentist and a whole slew of potential and more recent sources but there's no way to know. I do agree with the doctor, though, that 1969 was most likely my year.

If you're worried, try for a sooner-rather-than-later follow-up biopsy, maybe in another six months instead of a year and a half.

I looked at an interesting thread recently in which Upbeat mentions a study of some older Japanese women who had almost no disease progression and died of other causes.

http://www.medhelp.org/posts/Hepatitis-C/Reality-Check--/show/416662?personal_page_id=10229&post_id=post_2418889

Neither of us is a Japanese woman, as far as I know, but we COULD genetically or based on lifestyle not be prone to rapid progression.

I'd wait to see how the triple or quadruple therapy pans out if possible, based on a sooner follow-up biopsy.

[Mary4now]

I hope I'm in that same boat, I too was dx w/ hep in 71 but I dont remember wether it was B or non B, I was REAL symptomatic SICK for a good 2 - 3 weeks.  I had no clue what it all meant.
Now I show hep C with grade 1 , stage 1 and you guessed it Genotype 1, so I'm waiting as long as I can.
Waiting for some advances in our USA health care coverage, and in the treatment (if possible)  
I know someone who was in a horse riding accident, had emergency surgery (she rammed into a tree with her head) and now they wont release her because she cant afford the medication for her injuries even with insurance.  Can you imagine the hospital bill, what is wrong with this system?  its nuts.
Anywhoo, I hope every one has the best outcome and the least suffering.  May all beings be free from suffering.

[meakea]

I'm as sure as I can be that I was infected with Hep C during a blood transfusion when I was an infant 54.5 years ago.  I didn't find out that I have Hep C until April 08 and my liver bx in May 08 was G1/S1.

When I received my Hep C diagnosis last April, I went on a mission to try to find out how long I've had it and maybe even where I got it from since I had no obvious risk factors other than the transfusion in December 1954.  I ordered all of my old medical records and I found them back to the early 70's.  I was astonished to find that my LFTs were elevated way back then and, over the course of the years, my WBCs were low -- but none of my docs ever told me about these abnormal lab results.

That takes me back to age 16 with documented elevated LFTs.  I couldn't find my medical records back any further than that but it's pretty much likely that I had Hep C for a good long time before those documented elevated LFTs in order to have elevated LFTs by age 16 -- only obvious insult was the transfusion.

So, in answer to your question, yes it is possible to be infected 54.5 years and have a Stage 1 liver.  Oh, and my viral load was 30,100 in July 08. My GI backs me up on this and he backed me up on it even before I showed him my old records.

[skersj]

I probably have had G1a for 30 years from from blood transfusion in1979 but I also had a questionable dental appt in 1975. Dentist was old then in 1975 and I am sure he was in the height of his practice in 1940's and still did not used clean syringes because I remember him using an old metal instrument that I have seen in museum archives. It really doesn't matter now. I am 50 yrs old and dx was Stage 1 Fibrosis May 1979. I started tx 8/29/08. Slow responder, on week 32 of attempting 72 weeks. I am hoping for SVR because this tx is awful but keeping my mind open for better cure for the future. I still question my decision to treat now but I really thought I would respond better. I was in great health and it just seemed like a good time in my life to try. Now I have too much time invested to quit unless medically necessary.

[fretboard]

Yes it certainly is possible.  I think I was infected in 1973 and that's a little over 35yrs and I had a bx in 2008 and there was zero fibrosis.  My bx was a zero and grade 2, so maybe most of us on this thread have the same subtype.  I consider myself lucky in that respect, but after one has had it for this long it would definitely be most important to stay on top of it.  I am waiting to tx until the new PI's come out, maybe you should do the same.  We are lucky that it's been progressing slowly, but unlucky we're infected.  good luck

[Isobella]

Looks like many of us are in the same boat.  

My best estimate is that I have had HCV for 30-40 years based on 2 possible exposures. I was diagnosed iaand biopsied in 2008...Grade 1, Stage 0.

Even more surprising about those results is the amount of alcohol drinking that was going on prior to dx.

Bottom line, for me anyway, figuring the when/how of getting this virus drives me crazy.

I also think it would make you feel better to get the second biopsy sooner rather than wait a year-  but I don't know if that is possible where you are.  Can you come back here for it??


Good luck to you, Mike.

[annieCinMD]

You and the others have got me way beat on length of time, but I believe I got it between 1980 and 1988, and have the same grade 1 stage 1 numbers. Little to no damage was what the report said. I've heard it could take up to 50 years to act up or may never act up..but then again it might and can destroy your liver. Most likely scenario is you die with it, not of it. I decided it's like living with a time bomb inside me, so I'd give tx a try.  Wasn't there a thread on here a few weeks back about "healthy, chronic carriers"?  I think that we fall into that category.

[jmjm530]

Mike,

It's always a **** shoot but unlikely you will progress from F1-2 to F4 within the next couple of years, therefore waiting for the better drugs is a reasonable option. That said, I'd personally biopsy again in 1-2 years considering your age and studies that suggest most will reach cirrhosis by around 65 regardless of infection date. Lastly, I'd get hold of your biopsy report and original slideset and have them reevaluated by a pathologist at a major U.S. teaching hospital to confirm your stage

[susan400]

Anything is possible with regards to this disease!  I am 99% certain that I was infected in 1983, however I've had bridging fibrosis for the past 7 yrs, (past 2 biopsies), grade 2 stage 3.  So, 26 yrs now.   I am 47, will be 48 in June.  I will be 2 yrs. since the last biopsy, in another couple of weeks.

Susan400

[mike716]

Thanks, everyone, for all the support on this. I no longer feel out on a limb by myself. Looks like it´s fairly common to go on for a long time without progressing much; but, as some said, you never can tell when it´s gonna act up. And being 65 isn´t so good, especially re that scary report that jmjm530 mentioned. (Yeah, I read it, too. Wish I hadn´t.)

The real dilemma here is that there´s no good diagnostic that you can do once a year. They won´t do a biopsy more frequently than every 2-3 years at my hospital, which I think is generally true everywhere, and it´s probably for good reasons: sticking needles into a sick liver isn´t cool.

I talked it over with the hep today and he calmed me down, as usual. According to him, the increases in liver enzymes aren´t directly correlated with disease progression. I checked back in the literature when I got home, and apparently there is no consensus on this issue: ALT may or may not be related to progression, there are arguments on both sides. The GGT isn´t, that´s apparently agreed on. What else the blood tests show is anyone´s guess. But if they don´t show disease progression why waste time with them? (Possible answer: the MDs don´t know what to do so they just keep busy with a lot of tests. Makes it look they´re doing something useful. Earning their pay, so to speak.)

Anyway, I´m back in "Don´t worry, be happy", "Wait for better tx" mode.

What the heck, I´ve had a mostly fun 65 years and can´t complain. So I don´t mind checking out, really. I just don´t want to end it with a lot of pain. So I´m making plans.

But everyone´s got a different take on what life´s all about, I guess.

Again, thanks to all.

(I´ll send a few directed posts after this.)

Mike

[mike716]

Hiya, Baja (huh?)!  [Are you Bajawoman ´cause you live in Baja California, you lucky thing?]

What, if you don´t mind my asking, are your "issues from having it so long"?

Mike

[Duke3d]

My recent biopsy said stage 0 grade 2. The only exposure I can think of was 33 years ago. In the time between then and diagnosis I had 2 to 2 bottles of wine per week.
So maybe we are after all the lucky ones.

[apache1]

quote from mike716
The real dilemma here is that there´s no good diagnostic that you can do once a year.
===============================================================

Yes there is.
A fibroscan or a fibrosure blood test that confirms a current bx is a good indicator for liver damage progression. Along with your blood work a hepatologist can get a good handle on your progression. These are non evasive test. Either one or both can be done twice a year if you want.

I had HCV for at least 38 years and was a stage1-2 at dx last year.

apache

[mike716]

You may not be a Japanese woman, my dear, but how do you know I´m not?

Kidding aside (uh-huh...), I don´t trust too many reports and especially not the Japanese ones (no, I´m not a racist). I´ve read quite a few, particularly about nutrient therapies, that directly contradict all other research. There´s something suspicious about all those HCV+ women over 60 dying of other causes. You can get almost any result you want by choosing your study population and your controls and procedures.

M.

[Rockerforlife]

Ive had it since 1980...thats 30 years ago...im a stage 2

[mike716]

What do you mean they won´t release your horse-riding friend? Is she being held hostage by the hospital? What are they gonna do if she can´t come up with the money, liquidate her and sell her organs to cover the bills? Has it finally come to that?

[Rockerforlife]

and i may add i was a weeked warrior for all those years....i finally stopped in 2005...its amazing im still alive

[Rockerforlife]

It happens in China...big business....Thank God for Canadas health care system...i can even go on disability while im on this trial

[mike716]

Hey, that´s a good idea, finding old medical records to see if they did liver enzyme blood tests. I may try it myself, although I´m not sure how to find the records, or if clinics and hospitals save them for so long.

You wrote: "none of my docs ever told me about these abnormal lab results." That´s not too surprising Most regular docs don´t know peanuts about the liver or HCV. Dig this: I had a hepatogram done in 2005, saw that the ALT was over the Upper Limit of Normal, and showed it to a hepatologist, who said "Don´t worry, it isn´t so high. Forget it" !!!

[mike716]

Dentists are dangerous, period. I´ll bet there is as much virus being spread by dentists as all other health care infection put together. Some use ancient syringes. Others don´t sterilize the glass in them long enough. Still others re-use partly-used anesthetic vials in order to save money. And how many use disposable scalpels?

There´s only one thing worse than a doctor: a dentist. Money, money, money, Greed, greed, greed. Retire at 40 and play golf. Now it´s implants. Pull out all those dirty ol´ teeth and stick implants in. Just 5 large ones each, crown included. Step right up and get ém while they´re hot. Yessirreee. Whoops, forgot to sterilize that syringe. Don´t worry, you can go forty maybe fifty years with HCV before ya kick the bucket. No implants today? How about a little periodontal surgery? We´ll just mash up all your gum for ya and it´ll be like new. Just four thou. No charge for the virus, ha-ha.